Tuesday, 12 August 2014

Getting Young People Heard

Today is
International Youth Day, a United Nations initiative that raises awareness of
important issues affecting young people. The Cystic Fibrosis Trust is proud to
support this important programme, and Dr Erika Kennington, Head of Research at
the Trust, would like to tell you about some of the work the Trust has been
doing this year to engage with young people living with cystic fibrosis,
including recently on our social media channels.

Young
people form an important and sizable section of our community, and yet as a
group it is one we don’t hear from very often. In partnership with the
Association of Young People’s Health (AYPH), we have been inviting young people
to share their experiences of living with cystic fibrosis, the challenges it
brings and the impact it has on their lives.

We
carried out a series of interviews via video chat and set up a Facebook group
to follow up as well as opened up the conversation via Twitter, to make it as
easy as possible for people to share their stories and experiences.

Thank
you to everyone who took part, and told us about what it means to be a young
person living with cystic fibrosis today. Your input provided the basis for a
small booklet of messages we are currently putting together, which young people
can use as a resource to educate, inform and engage with key groups such as
teachers and clinical staff..

For
example, one of the things that came up was this message, for staff at CF
centres: “Take the time to explain important things to us – like fertility,
segregation of patients with CF and transitioning to adult services.”

There
is also advice to take and pass on to other young people with cystic fibrosis,
such as: “Although it feels boring and difficult sometimes, taking medication
and doing physio is the best way to manage your illness.”

And
of course, there are tips for parents: “Be willing to let go and let us take
control when we are ready – encourage our independence so we are comfortable by
the time we have to be in charge of our own care.”

We
are very excited about publishing this booklet, and we look forward supporting
these onwards conversations.

You can find out more
about what it’s like to be a young person with cystic fibrosis in ‘...the rest is up to me’, a video
featuring teenagers with cystic fibrosis and read the conservation on Twitter
we had in July with the hashtag
#CFTyp.